Tag: care partner

Give yourself a break: dementia care takes practice

I’ve had a lot of people over the years say to me, “Wow! Dementia care? You must be really patient!” This is actually kind of funny to me, because one of the last ways I’d describe myself is “patient.” One of the main reasons I don’t want to work for someone else is because I can’t stand when things take a long time to accomplish. The corporate world is all about having meetings about having meetings about deciding things in a meeting. I can’t handle it. Needless to say, I am not a patient person, albeit in ONE area of my life: dementia care. I am incredibly patient with people who are living with dementia. Even so, I’ve made plenty of mistakes. I’ve said the wrong thing, made the wrong choice, and upset a person living with dementia here or there. It’s going to happen: you’re going to do the wrong thing. And that’s okay. Dementia care takes practice. I like to tell people that it’s an art form. Most of us didn’t get really good at painting, playing an instrument, performing on stage, or doing anything else just by waking up and magically being great at it. Most of us have worked years at our craft, honing it, learning, experiencing, practicing. Dementia care is the same way. So, give yourself a break. Maybe you said the wrong thing yesterday. Maybe you yelled at your loved one with dementia this morning because he asked (again) what time it was. These things happen. You’re doing the best that you can. And you’ll keep getting better.

July 25, 2021

What If I Visit and They Don’t Know Who I Am?

Care partners regularly ask me about one of their deepest fears. The fear usually goes like this: at some point, you’ll walk in to visit your loved one, and that person will look at you with a blank stare. “Who are you?” they’ll ask you, as your own eyes fill with tears. Here’s the good news: this fear is mostly nonsense; a myth perpetuated throughout modern society through movies and TV shows. I blame 2004′s “The Notebook” for about half of it. Spoiler alert: if you haven’t seen The Notebook (it came out in 2004, so if you haven’t seen it yet, I doubt you will) — one of the main characters has dementia and her husband comes to read to her every day. She seemingly has no idea who he is, until, suddenly, she remembers everything about him and their past together. Then, just as suddenly, it’s all gone and she’s screaming, crying, “Who are you?! Help me, help me! Who is this man!” Frankly, it’s nonsense. That’s not how dementia works. Yes, people do have more “lucid” moments sometimes, especially when a person has something like Dementia with Lewy Bodies or Parkinson’s disease dementia, but COMPLETE clarity to ZERO clarity doesn’t exist. (If you’re still doubting me, watch that movie and let me know your thoughts…it’s totally Hollywood!) If your loved one doesn’t seem to “know who you are,” it’s not because they don’t love you. It’s not because they don’t know you. It’s not because they don’t recognize you as an important person. It’s because they can’t figure out how you fit onto their timeline. As an example, if you are 65 years old and your father remembers you being only 35, he’s going to wonder who this lovely 65-year-old woman is when you walk through the door. “Wow!” he thinks. “I know I like this person, I know she looks familiar…but from where?” In his mind, you’re 35, not 65. He may call you his wife, his sister, or another female relative or friend. This makes sense, right? I call this idea Timeline Confusion(TM). In this situation, we don’t want to spend time saying things like, “Dad! Don’t you remember? I’m your daughter!” Instead, it’s best to go along with where his timeline is. If he thinks you are your mother, that’s okay. If he suddenly begins touching your thigh, it’s okay to move away and come up with an excuse, but if he just wants to spend time with you, don’t exert effort trying to force him onto your timeline. If the person living with dementia is your grandparent, there may be a very good chance that, in their mind, you don’t even exist yet! If they think of themselves as being your age, how the heck would they have grandkids? I’ve met a LOT of people living with dementia. I’ve only seen this Timeline Confusion happen a handful of times: most of the time, people recognize their loved ones on their timeline throughout the entire course of the disease. If Timeline Confusion DOES happen to your loved one, it will happen slowly. If something changes suddenly, it’s because there’s a medical problem: they may have a Urinary Tract Infection or suffered a small stroke. Change like this doesn’t occur overnight. When you’re seeing a loved one after not seeing them for a bit, introduce yourself slowly. You might walk into the room and say, “Hi! How are you today?” and see what their reaction is. Allow them to identify you. If they struggle, don’t say, “I’m your daughter, Rachael!” but say, “I’m Rachael.” Allow them to tell you who “Rachael” is to them. For more on all this good stuff, check out my eKit on Embracing Their Reality(TM).

March 7, 2021

Never ask someone with dementia if they “remember your name”

Are you enjoying my blog posts? Grab a free download of one chapter from my audiobook here and also receive any future helpful tips and posts right to your inbox! If I can, I always opt to ditch my name tag in a dementia care environment. I let my friends with dementia decide what my name is: I’ve been Susan, Gwendolyn, and various peoples’ kids. I’ve been so many identities to my residents, too: a coworker, a boss, a student, a sibling, a friend from home, and more. Don’t ask your friend living with dementia if they “remember your name” — especially if that person is your parent, spouse, or other family member. It’s quite likely to embarrass them if they can’t place you, and, frankly, it doesn’t really matter what your name is. What matters is how they feel about you. Here’s my absolute favorite story about what I call, “Timeline Confusion” Alicia danced down the hallway, both hands steadily on her walker. She moved her hips from side to side, singing a little song, and smiled at everyone she passed. Her son, Nick, was walking next to her. Nick was probably one of the best caregivers I’d ever met. It wasn’t just that he visited his mother often, it was how he visited her. He was patient and kind—really, he just understood dementia care. He got it. Alicia was what I like to call, “pleasantly confused.” She thought it was a different year than it was, liked to sing and dance, and generally enjoyed her life. One day, I approached the pair as they walked quietly down the hall. Alicia smiled and nodded at everyone she passed, sometimes whispering a, “How do you do!” “Hey, Alicia,” I said. “We’re having a piano player come in to sing and play music for us. Would you like to come listen?” “Ah, yes!” she smiled back. “My husband is a great singer,” she said, motioning to her son. Nick smiled and did not correct her. He put his hand gently on her shoulder and said to me, “We’ll be over there soon.” I saw Nick again a few minutes later while his mom was occupied with some other residents. “Nick,” I said. “Does your mom usually think that you’re her husband?” Nick said something that I’ll never forget. “Sometimes I’m me, sometimes I’m my brother, sometimes I’m my dad, and sometimes I’m just a friend. But she always knows that she loves me,” he smiled. Nick had nailed it. He understood that, because his mom thought it was 1960, she would have trouble placing him on a timeline. He knew that his mom recognized him and he knew that she loved him. However, because of her dementia, she thought it was a different year. And, in that year, he would’ve been a teenager. Using context clues (however mixed up the clues were) Alicia had determined that Nick was her husband: he was the right age, he sure sounded and looked like her husband, and she believed that her son was a young man. This is the concept that I like to call timeline confusion. It’s not that your loved one doesn’t recognize you, it’s that they can’t place you on a timeline. What matters is how they feel about you. Not your name or your exact identity. Hungry for more information? Check out my site for information on classes, workshops, and more.

May 14, 2019

3 keys to accepting change in dementia

Are you enjoying my blog posts? Grab a free download of one chapter from my audiobook here and also receive any future helpful tips and posts right to your inbox! I host a monthly support group in my area, and yesterday’s meeting made me think a lot about acceptance. We had a great discussion: all the attendees are care partners of people living with Mild Cognitive Impairment or early stages of dementia, and they each expressed some level of learning to “accept” their loved one’s changing condition. When we talked about why and how people learn to accept a loved one’s changing condition, we also talked about the need to put resentment behind us. We acknowledged that it can be really difficult to not resent that a loved one can’t do everything they used to do: the chores around the house, moving from one task to another, even putting on a coat without reminders and assistance. Here are my 3 keys to accepting change in dementia. You probably have a few other ideas, so be sure to email me with those thoughts! I may add them to a new list. Recognize that if they could do it, they would. They aren’t not-doing-something to get on your nerves. They literally can’t. do. it. In fact, I’d argue that they probably don’t want to feel like a “burden” to you at all, and would be mortified if they ever truly realized how much they can’t do anymore. Dementia gives the person with dementia a “gift” every now and then: while it takes things away, it also prevents a person from realizing how much they’ve actually lost. You know, of course, which makes it all the more difficult for you as the caregiver. It’s about education and support. I find that the more people learn about dementia, the more accepting of a loved one’s condition they become. Consider this: the don’t-get-it-won’t-get-it people never come to my workshops or training sessions: they don’t want to “get” it! If you’re reading this, you want to get it. That’s huge. It speaks volumes of your character that you’re out here, searching for more information, educating yourself. I also recommend support. Support for you may mean many things, but most of all, try to find a support group in your area. I 100% guarantee that other care partners have very similar stories to your’s. It’s okay to get frustrated. Don’t beat yourself up for snapping at them yesterday after they asked about that thing for the 15th time. You’re allowed to get annoyed, as long as it’s not all the time. If you find yourself snapping at your loved one daily, it’s time for you to get some extra help. This means time to yourself, caregiving assistance, maybe therapy, and definitely a support group. Remember that even if your loved one forgets day-to-day interactions, they won’t forget ongoing emotional battles. Are you subscribed to my blog? Never miss a post!

April 30, 2019

#1 Reason That Routine Is Going to Save You a Lot of Drama

Are you enjoying my blog posts? Grab a free download of one chapter from my audiobook here and also receive any future helpful tips and posts right to your inbox! Routine. It’s about what you do regularly, probably every day, even if you aren’t consciously thinking about it. Routine is essential when you’re caring for someone with dementia. Not only is it just about what you do, it’s about what they used to do. What does that mean? It means that we need to rely on prior knowledge about the person with dementia to help us establish a positive, successful routine. What they do NOW may not be exactly what they used to do, and the person with dementia is, as we know, usually pulling from the PAST for information about their current life. And you may be thinking, “Well, duh!” but, really, consider this: in order to really assist someone with dementia, you need to know them as an individual. My favorite example is this: if you’ve been taking a shower in the morning for the last forty years, and then someone shows up at your house to assist you with a nighttime bath…is that going to throw off your whole day? Yeah it is! You’re going to be grumpy, frustrated, and probably confused. Many people with dementia are unable to say, “Hey, I’ve been a morning-shower-person for years, can we change my schedule?”Instead, you just end up trying to give someone a bath who is irritated and confused by the change. Now, they’re in a bad mood, but you aren’t sure why. And, really, it’s just because you didn’t adhere to their old routine. Tiny, almost insignificant-seeming things make up important pieces of an individual’s life. Take me, for example: I always sleep holding a pillow. And, it can’t be just ANY pillow, okay? It has to be a certain size and shape. Now, this may seem odd, but it’s a huge part of my nighttime routine. When I’m missing my pillow, or when I try to substitute a different pillow in its place, my whole sleep cycle gets thrown off! In order to create a routine that works best, learn about the individual and what they used to do. It’s going to save you a lot of drama and detective work on the back-end! Are you signed up to receive my emails, yet? What are you waiting for!

April 7, 2019

Dementia-Friendly Days Out

A guest post by Ruby Clarkson | Writer, editor, animal lover and coffee enthusiast Dementia is a challenging group of diseases that causes many different problems, but that doesn’t mean that those who are living with dementia can’t enjoy a lovely day out. In fact, it is good for them to get out and see different things – any kind of stimulation for the brain can help them to feel more like their old selves, even if the feeling is not a permanent one. And for those caring for friends or relatives who have dementia, it can be difficult to decide where to go and what to do. A day out is good, but where is safe and secure? Where will make the person happy? Where will cause more upset? It can often cause stress and anxiety for the carer, and in the end the idea of a day out can be mooted, which is a shame. I reached out to Dorothy, an individual that has her dementia care provided by Helping Hands in order to obtain an insight into how a day out can be friendly. Dorothy stated that “There really is no place like home, and with Magda’s support I am able to keep in touch with all of my friends and neighbours. We visit church every week for the Sunday morning service, I can visit the shops and I also take part in a local knitting group. This really is one of the greatest joys of staying in my own home around people I know.” With Dorothy’s case in mind, here are some places to go and things to see that are particularly dementia friendly. You’ll see the difference immediately, and hopefully make your loved one happy for a while. A Trip To The Past What many people find with those with dementia is that although their short term memory is not good – perhaps it doesn’t even exist – their long term memory is almost entirely intact. Therefore, a day trip that offers a glimpse into their past will be ideal, and help them to feel at ease. Think about places they used to go to as children, for example. It might be that a day at the seaside is perfect, complete with deckchairs, ice creams, and even donkey rides. Let them enjoy the sun and build sandcastles and feel the wind in their hair. Or perhaps a museum with plenty of exhibits that link back to when they were younger. They will happily be able to talk about what they see and enjoy the day immensely. Relaxation It can be tempting to try to do as much as possible when you go for a day out, to make the most of the time you have together. Yet this isn’t always a good idea, especially for someone with dementia who can be easily overwhelmed by too much stimulation. It might be better to enjoy a nice, relaxing day together instead. It could start with a trip to the hairdressers or barbers, and then you could have a spot of afternoon tea together (this links in with the memory trips as mentioned above). Afterwards, you could go to a library or go to a spa for a swim and some treatments. Fresh Air Outdoor pursuits are always a good idea. People with dementia can often feel cooped up and anxious when they are indoors, and as well as that, fresh air is good for you. So it makes sense to get outside and enjoy what nature has to offer. Not only is it a healthy option, but it is relaxing too. The local park is always a good place to take someone for a day out, no matter what their age or what their condition might be. Arrange a picnic with their favourite foods and feed the ducks if there are any there. Take a stroll, notice the clouds and the trees, enjoy every moment. It is these simple pleasures that really make a difference. A Sing-along Although a lot of the memory of a person living with dementia will be affected, there is something about song lyrics that seems to linger, and it is for this reason that a good old sing-along might be exactly what the patient needs to enjoy their day and feel better. You can do this in your own home if you like, simply downloading songs from the past to listen to and song along with. Alternatively, you can find a concert venue that is offering this kind of music too. The Cinema If you take a look at the film listings for your local cinema you might be able to spot some special screenings that are labelled as ‘dementia friendly’. If there aren’t any, you might need to search for a larger venue, but these films do exist. The lighting is brighter, there are no trailers or ads before the film starts, and the environment is relaxed and friendly.

March 28, 2019

Improv comedy and dementia care workshop now online

Our workshop is officially ONLINE which means you can take it from wherever (and whenever) you want! This is a cool opportunity for you to see how improvisational comedy works with dementia caregiving, especially if you can’t make it to Pittsburgh, PA for our workshops. We travel, so we’re happy to come to you, but if you’re just one person it’s more cost-effective to take the class online! If you see this before the end of the day, use code MARCH28SALE for $25 off the normal price of the class. HERE’S THE LINK!

March 28, 2019

16 Things I Would Want If I Got Dementia

I wrote “16 Things I Would Want If I Got Dementia” back in 2014. I later added four more items to make it 20 Things I Would Want If I Got Dementia. Please note: the one available here on my site is the only one that you should ever repost, and it must be reposted as an image. The idea for the list came to me while I was driving my car, and I pulled over and jotted down a quick note in my phone. If I had known what it would later become, I never would’ve put it on the Internet as a simple text-based poem: I would’ve turned it into a PDF or JPEG image immediately. About every 6-12 months, someone rediscovers my poems from the depths of Facebook and reposts it to their feed. It will read something like, “Copy and paste this if you have a loved one with dementia!” It never has my name. Sometimes, it’s attributed to “author unknown.” This is particularly frustrating. I want to scream, “The author is known! She’s right here!” Often, someone will add something to the copy/paste poem that is incorrect. As an example, they may tell people to introduce themselves and their relationship to a person living with dementia. “No!” I want to cry. “Please don’t do that in that way!” But I can’t. By then, the poem has thousands of likes and hundreds of comments. Typically, some type of “influencer” will spot it, repost it carelessly, and from there it’s off to the races with incorrect information and without my name. This happens about every six months. You may be thinking, “So what? At least your great information is out there to help people.” If you’re feeling this way, I can almost guarantee you’ve never created something that was then taken from you, altered slightly, and tagged as “creator unknown.” There’s a weird, heart-racing feeling I get every time a friend sends me a screenshot of the poem they spotted on their feed. “Hey Rachael, I just saw your poem again!” Ugh. We’ve started sending intellectual property lawyers after these copyright violations, mostly because it’s too painful for my team and I to try and do it ourselves. 75% of the time, people are very nice and will take it down or repost with the image without a battle. The other 25% of the time, the person will launch into a personal attack. “WOW! I thought you wanted to help caregivers but you must be a terrible person because you won’t let me keep this poem on my website!” I don’t know why asking for them to add my name and website, or simply adding the downloadable image, makes me a bad person…but apparently, it does. Now, we try our best to take ourselves out of the equation: we send to the lawyers, I close my eyes as I hit the “pay” button on their invoices.

March 17, 2019

Why the loss of control motivates most “behaviors”

Are you enjoying my blog posts? Grab a free download of one chapter from my audiobook here and also receive any future helpful tips and posts right to your inbox! Cecilia was having a hard time. Suddenly, she couldn’t do all the things she used to do. She had once owned her own business, handled all her finances, made her own daily plans, raised children, and more. Now, with dementia, she couldn’t manage those tasks. Now, her family was doing everything for her, and it made her angry. “Stop messing with my checkbook!” she yelled at her son. “When did you last take the trash out?” she asked her husband with a tone of frustration. Often, she stayed in bed, saying she didn’t “feel well.” This was very new for her family—they’d never seen her like this! It was no wonder that Cecilia seemed annoyed, detached, and anxious! She was once a woman who handled everything in her life, but now, with dementia, she had lost a lot of control. A feeling of control is important to most everyone: we want to know that we have the ability to make choices and change things in our lives if we want to. When we feel like we have no control, we start to panic. It makes a lot of sense that Cecilia was so agitated and irritable with her family: it stemmed from fear. Many of the “behaviors” we see in dementia (hoarding, irritability, accusations, etc.) come from a place of fear, and that fear is usually based on a loss of control. How do we help someone who feels this way? The best thing to do is to give them back some of that control. Obviously, you can’t let your confused loved one fill out the checkbook, but you can let them help you make a budget. Ask your loved one “for help” when completing a task, even if you don’t need (or want) help with that task. This is another reason why chores are such a great thing to try with people living with dementia: they are task-based, often simple, and part of daily life. Even in late stages, most people are able to fold a hand towel or match up socks with some assistance. Ask “for help” (not if they WANT to help, but rather if they CAN help you) and see the change in your loved one’s behavior. No one wants to feel like they lack control over the most basic parts of their existence. Have you signed up to receive my blog posts?

March 10, 2019

The BEST communication tip I have

Are you enjoying my blog posts? Grab a free download of one chapter from my audiobook here and also receive any future helpful tips and posts right to your inbox! Here it is, the best dementia care communication tip I have for you. Although I’ve been using it (and tweaking it) for a long time now, I didn’t really “name” it until very recently. Ellen had a problem. “Dad wants to go out walking around the neighborhood, like he used to do…but he’s so confused! I’m terrified that he’s going to get lost or hit by a car or something awful. How do I convince him he can’t walk around the block anymore?” I paused and thought for a minute. “You can’t convince him that he can’t walk by himself,” I said. “So you need to ask him if you can go with him.” CAN vs. WANT If Ellen were to ask her father if he “wanted” her to go with him, he’d almost definitely say no. No, he’d think. This was his walk, this was his thing—he didn’t need or want help! Instead, I suggested she rephrase her question: “Dad, CAN I go with you? I’d love some exercise!” It’s a totally different question, even though the goal is the same: she wants someone to go with him so he doesn’t get lost. Now, though, it’s hisidea if he takes her along. He’s also very unlikely to turn her offer down, because she’s asking for his acceptance and assistance. Use “CAN” statements in dementia care, instead of WANT statements. For example, check out these comparisons: Do you want to paint this birdhouse with me? vs. Can you help me paint this birdhouse? Do you want to take a shower now? vs. Can you take a shower now, we are getting ready to go out? I want you to help me set the table for dinner! vs. Can you help me set the table for dinner? The doctor wants you to move to assisted living because of your dementia vs. Can you help me pick a great place for you to stay during your rehab? The beauty of this phrasing is that you can really use it in any part of your life, dementia care or not! People are much more willing to do things if they feel like it was their idea to begin with. Have you signed up for my blog yet?

January 1, 2019